Where to find info on what to order for colostomy care.

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Christine1946
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Date Joined Aug 2008
Total Posts : 5975
   Posted 5/25/2010 8:59 PM (GMT -6)   
     I have no clue, nor did my surgeon tell me, where to order everything I will need after my operation.  I am scheduled for surgery June 28th but possibly will have it sooner (permanent ileo).  I feel so ignorant.
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/25/2010 9:04 PM (GMT -6)   
Christine,

You don't need to pre-order anything. You will be visited by an angel in the hospital who is an ET nurse. They handle the ostomy end, the surgeon does not. Most of us are taught how to handle the ileostomy in the hospital and are sent home with a package of "one size fits all" ostomy products. You will get a home visit from an ET nurse after discharge. He or she will evaluate your stoma and find the best fitting product for you. At that time you will start ordering your own products. Try not to worry about this.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 5/25/2010 9:18 PM (GMT -6)   
Also, your insurance will tell you where you need to order your supplies.

Diagnosed with UC in Feb. 2005
 
Asacol, Colazal, Prednisone, Rectal Meds, Remicade, Humira
 
Now UC Free!
First step of j-pouch - April 1, 2010
Second Step - TBD
Third Step - TBD


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/26/2010 1:06 PM (GMT -6)   
Christine, I ordered an Edgepark catalog and I was like WOW....There is alot to choose from for ostomy patients which is a good thing, but very confusing for you and me. I will be having surgery on June 21st for a temporary loop ileostomy. I worry I will run out of supplies when I come home because I haven't ordered any and don't think you can even try to order them until you see your stoma. Maybe me and you can chat since our surgeries are so close together....

Have you ordered an Edgepark catalog? Just google it and it should come up..Tracy

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 5/26/2010 1:25 PM (GMT -6)   
i just had my temp loop ileo and i didn't worry at all about running out of supplies ... well, I did, but the nurses at the hospital gave me plenty of samples to take home so I could at least have 3-5 weeks worth of supplies. The ostomy nurse then comes to visit you at home and will help you out in figuring what it is that you need to order. Most places deliver the stuff within days so it won't be an issue. You will be ok and you too, answers4me2.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 5/26/2010 5:01 PM (GMT -6)   
Christine! I don't know how I missed that you have finally decided on the ileo! Congratulations on hopefully feeling GREAT soon :) I am so relieved for you.

Like everyone else said, you don't have to worry about ordering anything now. Your nurse will help you after your surgery. Mine came in the hospital and explained how to change my appliance and gave me a little booklet to look through that had (so many!!!) supplies in it. It will depend on your insurance as well. Like everyone else said, they will give you a bunch of samples to take home so you'll be good for a few weeks.

Keep us posted on everything! I'm so jazzed to hear how everything goes.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/26/2010 6:01 PM (GMT -6)   
     WHEW...thank you all.  To me, you are ALL angels.  I was so worried about this.  It is a bit overwhelming.  I had to increase my prednisone today to 40 mgm cry .  Yesterday and today were awful and I knew I would wind up in the ER if my condition didn't improve fast.  So, I phoned the surgeon's office and was told to go up to 30 or 40 until I see marked improvement.  They said I had enough time between now and surgery to taper again.  Hope I pass my stress echo scheduled for next Tuesday.
     Tracy...no, I didn't order an Edgepark catalog.  You think I should?
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/26/2010 7:37 PM (GMT -6)   
Byrams.com is where I get mine. Stoma nurse set me up with the "system" in the hospital. Best Wishes, Rosemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/26/2010 8:39 PM (GMT -6)   
Christine, I ordered the catalog so I could look at what ostomy supplies look like. I have also watched videos on youtube about how to care for an ostomy. It seems very foreign to me since I have never seen an ostomy in real life. Watching it on the web is just not the same as actually seeing one in real life. LOL I guess we both will learn lots about ostomies when we get our very own. Rosemary who posts here has told me how to change the bag, etc and it just seems so darn complicated...But, surely it is easier than what I deal with now. Good luck with your surgery and I hope the predisone helps you to get to a better point until you can have your surgery. Tracy
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